Home parenteral nutrition

Why do I need home parenteral nutrition (HPN) or home intravenous (IV) fluids?

Our intestinal rehabilitation team (IRT) believes that the best way to keep you as healthy as possible is for you to have parenteral nutrition (PN) or IV fluids at home. This is given via a line (sometimes referred to as a catheter) in your chest or into your arm which will carry fluids (and nutrients if PN) directly into the blood stream, bypassing the normal digestive system. This booklet is intended to inform you about HPN / home IV fluids, its risks and benefits, and will serve to refresh your memory once you are home.

Will I be able to cope?

There are many people receiving PN at home who have been able to overcome their initial concerns and perform the recommended care very safely - some unaided, others with help from a family member. Initially the infusion will be administered by a qualified support nurse who works for a home care company, and they will instruct and train you to become independent in PN administration if it is deemed appropriate to do so by the clinical team.

What happens when I get home?

Our IRT provides regular prescriptions to the home care company, who will deliver your PN feed every one or two weeks. If you have any concerns about your feed prescription please call us for advice on 01223 216655.

The company will deliver all the equipment you will need to administer PN at home. All your disposable items will be delivered monthly. They will contact you for a stock check before each delivery to ensure you have adequate levels of both PN and disposable items.

Your PN treatment will be closely supervised by Addenbrooke's IRT. We will see you regularly in our HPN clinic and will keep your general practitioner fully informed.

Telephone numbers

IRT

Monday to Friday, 08:00 - 16:00
Nutrition nurse specialists: 01223 216037 option 2 or 07710 365157
Email PN team
Intestinal rehabilitation dietitian: 01223 216655
Outside office hours, contact ward U2 on 01223 388168

If U2 nurses are unable to help, they should contact a senior member of the gastroenterology team or the medical on-take team to deal with your problem.

Addenbrooke's Hospital

Telephone: 01223 245151/ 01223 805000
Hills Road
Cambridge
CB2 OQQ

Home delivery company co-ordinator and on-call nurse

For enquiries about your deliveries, pump or equipment issues and any out of hour’s problems:
Baxter: 08000 288 966
BBraun: 0800 8405503
Calea: 0800 121 8300
Lloyds Pharmacy Clinical Homecare: 0345 2636 123
Monday to Friday, 8:00am – 5:30pm
0800 326 5465 or 0345 2636 115
Monday to Sunday, 5:30pm – 8:00am

Is there a support group for people on HPN?

Yes. Patients on intravenous and nasogastric nutrition therapy - PINNT for adults, and half PINNT for children is a self-help group organised by people needing nutritional support. Membership is free if you are having artificial nutrition support. Family members may apply for associate membership. Members receive a three monthly newsletter written by people on artificial feeding. It makes an excellent read and is full of ideas, experiences, help and amusement.

For further information:

PINNT website (opens in a new tab)

Telephone: 020 3004 6193

Email PINNT

Is PN as good as eating?

PN does not give the same pleasure as eating, but provides a regular supply of essential nutrients and fluid to the body. The bag will include carbohydrates (glucose), fat (lipid) and protein (amino acids), vitamins, trace elements and electrolytes.

Will I be able to eat and what will happen to my bowels?

As everyone’s bowel functions will differ, the IRT will advise depending on your condition. For some people, not eating gives relief from symptoms. Others will comfortably be able to eat full meals and may only have a need to have additional fluid. Most people will be somewhere between the two.

PN is not absorbed into the bowel, so any digestive problems should not be made worse by having PN. However, even when you eat and drink very little the bowels will continue to work, as fluid and mucus is always produced by the bowel wall.

Once home, if you find yourself being able to eat more or less than usual, it will be useful if you keep a note of any changes in your bowel habits or weight gain or loss, and keep the IRT informed.

How will the food / fluids enter my veins?

You may have a Peripherally Inserted Central Catheter (PICC) placed which is a more short-term line that is inserted into your arm. We may change this to a longer term line known as a tunnelled line (e.g. a Hickman line) after discussion with your consultant gastroenterologist at a later date.

The alternative, which is a longer term line, is a Hickman line that is often referred to as a “tunnelled” line. This line is a fine, soft venous catheter (line) inserted under the skin near the centre of the chest.

It usually runs under the skin as far as the collarbone, before entering a vein. The PN is delivered from a large infusion bag that is connected to your line.

The line is temporarily fixed to the skin with a suture, which will be removed approximately three to four weeks after it was inserted.

A special dressing called a Biopatch will be used on the line site until the suture is removed. A “Dacron cuff”, which is part of the line, lies just under the skin, and this will then hold the line firmly in place near to the exit site.

The vascular access unit (VAU) will place these lines and will give you more information on your type of line and its care.

Can the line be used for other infusions?

Under normal circumstances, the line should be used to only supply your PN. For your own safety we do not allow other infusions or blood sampling with your line. There are however exceptions to this rule; if we suspect that you might be developing a line related infection, a blood sample taken directly from the line will help us make a diagnosis, and antibiotic treatment for the infection will be most effective if given into the line. Some lines will have a second lumen – if we deem it appropriate this may be used for blood sampling or other medications.

Do I need to keep my line covered?

PICC lines

A PICC line must always be kept dry and covered. The dressing keeps the line in place. Cling film and tape or a waterproof sleeve obtained from a chemist can be used when showering. If at any time the normal dressing becomes loose, damp or wet, change it as soon as possible. If possible, you should avoid using the bath as it is essential not to submerge the line or the dressing in the water as this creates an infection risk.

Hickman lines

Many patients prefer to cover their Hickman line (tunnelled line) site with a protective dressing to keep it clean and dry at all times. After the suture removal it is no longer necessary to keep it covered - this is personal preference.

When you have a bath it is essential not to submerge the line / exit site in the water, and you should avoid getting the skin exit site or the hub wet, which risks infection. Cover your normal dressing and the whole tunnelled line with gauze and two overlapping plastic dressings which should be removed immediately after bathing.

Alternatively, it is acceptable to leave your tunnelled or Hickman line site uncovered if showering and then clean with your usual anti-microbial solution afterwards.

Unfortunately, due to the infection risk, it is not advisable to swim with either a tunnelled (Hickman) line or PICC line but this would be possible with a “portacath” line.

If you have any questions, please discuss with your nutrition nurse specialists and / or at your nutrition clinic appointment.

How will PN affect my family life?

Once home most people prefer to infuse their PN during the night. We will advise you of the infusion time (which is usually over 12 - 14 hours). This helps your body to cope with the concentration of nutrition administered. Starting and completing the PN infusion is best done in a clean, quiet room where you will not be distracted - preferably not the kitchen or bathroom.

We will arrange for the homecare company to provide a cleanable metal trolley and a portable pump with a backpack to allow you the freedom to move around or even go outside while infusing PN. You may receive a refrigerator in which to store your PN bags or the PN may be stored at room temperature. You will be advised on this by the IRT.

Can I go on holiday?

Yes, you can plan for a holiday as long as you co-ordinate with us ahead of time to ensure you can still have you PN infusion using holiday bags which may or may not require refrigeration.

Travel letters can be written if you provide all your relevant travel details in advance.

Please discuss any travel plans with the IRT as soon as you make arrangements.

What are the risks of home parenteral nutrition?

PN is linked with a high risk of line related infection which can be serious, even life threatening. If you develop a temperature above 37.5°C, you should always contact us in order that we can discuss and decide whether it may be a suspected line infection in which case you may have to come to hospital for tests. The IRT will advise on appropriate treatment, which could involve a hospital stay of seven to ten days if we do suspect a line infection.

Having a stoma (colostomy or ileostomy) or fistula is a high risk factor for line related infection. The end of the line (the hub) should be kept well away from a stoma or fistula bag. Very careful general and hand hygiene will help prevent bacteria being transferred from the stoma to the line.

The glucose and the lipid contained in the PN are essential because they provide calories. However too much glucose in the bloodstream can result in a high blood sugar which can make you feel unwell, pass a lot of urine and get dehydrated; it will also increase your infection risk. If your PN causes a high blood sugar, when you stop infusing PN you could feel quite lightheaded. Please discuss with the IRT if you notice this symptom.

There is a risk of a build-up of blood or lipid (fat) deposits in the line. This could cause partial or total blockage and would also predispose you to an infection. If a blockage cannot be cleared, the line will have to be replaced.

When a PICC line is inserted, an “external measurement” is noted by the insertion team. There is the risk of the PICC line migrating out of your vein if the dressing becomes detached or during a dressing change. If the line migrates more than 2cm out of the vein there is a risk of thrombus formation. Please inform IRT urgently if the line appears to have gotten longer.

Both infection and line blockage could in turn result in a venous thrombosis (a blood clot in a vein) which would need a course of anticoagulation, (medicine to prevent clot formation) removal of the line and replacement in a different vein. As there are a limited number of veins which can be used to give PN, if you have repeated problems with thrombosis or infections, suitable venous access can sometimes become problematical. If you develop swelling in your arms or face, particularly around your eyes, please contact the IRT as soon as possible as you may need further investigations.

In some people, long term PN may predispose you to osteoporosis, so we will monitor your bone health by arranging regular bone density tests and supplementing with medication if necessary.

In others, a combination of their underlying medical condition and some of the components of PN can affect liver function, but we will be monitoring you regularly in our home parenteral nutrition outpatient clinic to assess this.

We will carefully plan your nutritional treatment with the aim of avoiding or reducing these problems as much as possible. Your regular attendance at our nutrition clinic will help us monitor your situation.

How can I avoid the risks?

You are advised to:

• Follow our instructions on the timing and frequency of your PN infusions. We will prescribe PN to suit your fluid and nutritional needs.
• Take your temperature approximately one hour after being connected to the PN. Please see advice in the section labelled ‘line related infection’ for more details.
• Please contact us if you are feeling generally unwell. This will allow us to risk assess the issues and ensure that you receive the correct care and investigations.
• Attend your regular review at our Home Parenteral Nutrition outpatient clinic where you will see the consultant, specialist nurse and dietician who will monitor your progress and listen to any of your concerns.
• Do not hesitate to get in touch immediately with our IRT if you are worried or experience any problems.
• Ensure aseptic non-touch technique (ANNT) is used every time your line is used as described below. (The homecare nurses will teach you more about this).

What is aseptic non-touch technique (ANTT)?

Bacteria are found on our skin even after thorough hand washing. Bacteria from the skin can enter your bloodstream via the PN infusion, carrying the risk of serious infection. Your bare hands should therefore not come into direct contact with ‘key parts’ of the system. The key parts include the PN bag infusion port, both ends of the giving set, the syringe tip, the hub (end of the line) and the open end of the bionector. One of the ways we can help prevent bacterial contamination of the bionector is via a curos cap (see pictures on next page, though please note some parts may vary in appearance).

Infection can also enter from the line exit site (where it enters your skin), so it is therefore important to keep this area clean too.

General information about managing your PN

• Depending on your requirements, you may receive a combination of bags each day – this could include white bags (containing lipid), clear / aqueous bags (no lipid), vitamins and trace elements or plain fluids. (We will provide this information on a separate sheet once it has been confirmed.)
• If you are going to become independent with managing your HPN you will need to learn two procedures: ‘disconnecting the PN’ and ‘connecting the PN’.
• Plan to fit the infusion conveniently into your life. Using the portable pump in the backpack or fixed to an infusion stand by your bed, infuse the PN over the prescribed time.
• When the infusion is complete the line should be flushed with 20ml sodium chloride 0.9% (2x 10ml sodium chloride 0.9% flushes)
• PN should be stored in its outer protective bag either in your PN refrigerator at 4°C, or in a clean, dry place at room temperature – you will be advised on this by your IRT.
• You may hang the PN at room temperature for up to six hours before using. This allows any air bubbles produced during warming to rise to the surface, and may be more comfortable for you.
• We often cover the PN to protect some of the ingredients from light once it is removed from the refrigerator. Use the coloured plastic bag, as provided by the homecare company or put the PN in the pump rucksack.

Line (catheter) related infection

Line related infection is a serious complication and needs hospital treatment.

Take your temperature every evening approximately one hour after setting up the PN. If your temperature is above 37.5°C, and or you are feeling shivery, you must stop your PN and immediately go to your local Emergency Department. (ED)

Contact your GP who will alert them to your arrival. To avoid delay it may be preferable to use your own transport if you can, otherwise you will need to call an ambulance.

If you can flush your infusion off then do so.

If not bring your pump and infusion in the backpack and you will be disconnected in the ED.

• Redness, discharge or pain around the line exit site. These are all signs of infection.
• For all the problems above and after discussion, you may need admission to hospital for tests including blood cultures to be taken from your line and your arm. Your PN may be stopped for 48 hours until a diagnosis is made and results of blood tests are awaited. If an infection is suspected, a course of antibiotics will usually be given into the line, which may mean a hospital stay of seven to ten days.
• If you come into hospital you must tell the doctors how much PN you usually have each 24 hours to ensure that you are prescribed enough PN or intravenous fluids.
• The line should be used only to give PN. The only exception is for qualified nurses or medical staff to take a blood culture or to give antibiotics to treat a line-related infection.
• Hospital nurses are taught to flush your line using the same method as you. They will use ANNT (washed hands plus alcohol rub) to prepare flush / antibiotics and to clean the bionector. Nurses are instructed to put on sterile gloves to connect the flush, antibiotics or infusion to your line and when they take blood cultures. After taking blood cultures they should flush the line with 20ml sodium chloride 0.9%.

Do not allow anyone (even doctors and nurses) to connect anything to your line or remove the bionector if they have not cleaned it first with a Clinell wipe and left to dry for 30 seconds. They must wear sterile gloves for any intervention.

Day to day

• Weigh yourself weekly. Contact us to report any abnormal weight loss or gain.
• Always infuse your PN over the recommended number of hours. If you are running late, do not speed it up, as you may feel unwell.
• Blocked or stiff line: try to flush with 10 ml sodium chloride. If it is starting to feel stiff, contact us immediately. Delay may result in complete blockage. If the line becomes blocked let us know immediately as we will need to arrange to have your line reviewed.
• Fluid leakage from the line or the line exit site needs urgent review. Contact the Nutrition Nurse Specialists for advice. If it is outside of office hours, please contact the GP on call service who should arrange for immediate hospital review.
• Take precautions not to allow air into the line. Small amounts of air in the giving set will be trapped by the in-line filter. The home care nurse will show you how to run the PN through the giving set to help avoid this. However if air accidentally enters your line: clamp the line, then remove the air with a syringe (using ANTT and wearing sterile gloves) then flush the line with 10ml sodium chloride. Do not reconnect your PN. If a large volume of air enters your line this is very dangerous to you and may cause breathing difficulties. Stop the infusion at once, clamp your line, lie flat and contact us in working hours or the GP on call service.
• Do not forget mouth care. Mouthwashes may be useful. In addition, regular dental checks paying immediate attention to any problems is essential. Infection of your gums / teeth may transfer to your line through the blood stream. This could cause a serious line related infection.
• The Dacron cuff of your Hickman line (tunnelled line) should not at any time be visible outside the skin. If seen, you must contact us immediately on 07710 365157